Good Day

Today is a good day for me. Actually the last several days have been good! Which is a huge relief. I love being able to have fun with my kids, play on the floor with them, paint each other's nails, color, dance & be silly. And I enjoy having the energy to keep the house picked up (hey I have 3 kids, picked up is as clean as the house gets!) And have dinner ready when hubby gets home from work. I love so much to serve him after he has had a long day at work. He takes such good care of me when I'm sick, I'm thankful to have the energy to give back to him.
The problem with good days, I keep pushing & pushing myself. I never know how long good days are going to last, so I get done as much as I can. To the point that I over-do myself & work myself into a flare. Ooops!
The other bad thing that comes from good days, is those around you that don't fully understand how Lupus works, see you doing good, then think you're faking for attention when suddenly you're good days turned to bad days. Oh and then there are the people that don't care either way. Why I even allow those people in my life is beyond me.
It's such a catch 22 to have good days! And embracing these days & telling yourself not to let people who don't understand get to you, is so much easier said than done. So yes, as convoluted & selfish as this sounds, I kind of dread the repercussions of good days. I LOVE the good days & am incredibly thankful for how good I have been feeling. But, I dread what's to come. The crash & burn, the "but you were just so healthy yesterday, how can you be so sick today" comments, disappointing my 3 precious angels when suddenly I can't play like I was the day or days before. Just seems like so much for one person to handle, to constantly think about, "when will this/these good day(s) end?" "When will I be a disappointment to everyone again?"
I'm trying to enjoy feeling as good as I have been, better than I've felt in years. But, well there's always a "but" isn't there? I just wish more people understood like my awesome husband & Lupus Sisters do.
Good Days, are they really that good, knowing what's to come when the good day is over?
With that said, all 3 of my girls are napping, I better sneak one in too!
Love & energy filled, pain free days to you all! ~~Sarah

Lupus Sisters Awareness Bracelets

We recently took orders for awareness bands that say Lupus Sisters on them. They look great and all the money that doesn't go towards buying them & shipping is getting donated to The Lupus Foundation!

We will be taking orders once a month for the bracelets. They're $4.50 each. If your interested in a bracelet email us at LupusSisters@gmail.com subject: bracelets. If we're currently not ordering them at that time you can be asked to be put on the waiting list for the next month! I'm currently taking names down for people who would like to be on the waiting list for June.

Stressing and Seizures

Health insurance is sometimes to expensive for a person or a family to afford. So when you're chronicly ill or just sick very often having Medicaid or Medicare are very important things to have. I started on Medicaid in 2010 and had it all the way to January 2013. They turned it off because I was late turning in some paperwork (you can't mess around with Medicaid!) so after jumping through hoops and my husband giving some people a talking to I got my Medicaid turned back on last month! I was so happy I spent the whole rest of the next morning on the phone calling around for doctors that took Traditional Medicaid. After a few hours and a short break I had finally made an appointment with all the new doctors I needed to see. Sadly when you're a new patient you have to WAIT A LONG TIME for you first appointment. I won't be able to see my new PCP until July 31st & my rheumatoidologist until August 6th!

Everything was hunky dory until one day this past weekend... I was taking a nap and during my dream there was an announcement, and then they repeated the announcement except the second time it was different it said, "Melissa Clements is denied Medicaid for the following reasons...." I woke up saying "WHAT THE F***?!" To my husband reading two letters out from Medicaid. One for me and one for our 2 year old both saying we were getting kicked off Medicaid because we weren't Indiana residents!!!! I'll be 25 years old in August and I can truthfully say I've lived in Indiana for all 25 years!

Of course after reading the letters the Medicaid office was closed until the next Monday. My husband works A LOT! I mean seriously A LOT! When he is off his work phone rings 24/7. So we were excited when he actually got a four day vacation this past weekend! And wouldn't you know Shawn, Emma and I all had to go to Urgent Care for sinus infections! So we're all three really sick, and to top it off I was so stressed because of Medicaid that I couldn't sleep and we lost count of the amount of seizures I had in those few days. The seizures varied from petite to grand mal and I was pretty much stuck in bed or on the couch.

My husband called Medicaid today and when he texted me back that it was all fixed and it was just a paperwork mistake I was so happy!

I know doctors tell you all the time to avoid stress. I want to laugh in those doctors faces, and tell them to live a day in my life!

Love & Spoons,
Missie 

Brain Fog

As I sit here at a blank screen trying to figure out what in the world to blog about it hits me. BRAIN FOG! We all have "Lupie Moments" where we can't think, can't remember. Like now I'm still having a hard time trying to describe brain fog!

Brain Fog affects people of ALL ages and is described as confusion. You feel lost, confused, forgetful and even maybe depressed. Not only people with Lupus have brain fog; it's actual a very common problem, and for some reason isn't really recognized by people in the medical field. There are tons of reasons you could be experiencing brain fog, the most common are emotional, biochemical or physical. If you're to weak and can hardly focus thats a type of brain fog.

So how do we try to avoid these foggy moments? Most times it's inevitable, but a lot of people think that if you "exercise" your brain it'll prevent these moments. By exercising your brain I mean do crosswords, puzzles, or even math (ugh I know).

For me I have a hard time remembering the simplest things! The other day I had a ten year old correct my math while playing a game of Monopoly. I have a hard time remembering memories, what I was saying during a conversation, I can't remember math at all (needless to say my husband is going to be in charge of homework once Emma is old enough for school!), I start down an aisle at a store and have no idea why I was going there. I think my seizures, that have lasted for almost 4 years now, are aiding my brain fog. While having countless seizures I'm pretty sure I fried some brain cells.

Brain fog is stressful. Can make you very angry, depressed, or both. I get so stressed some times I feel like I'm going to explode with anger! At those moments I tell my husband I need to seriously be alone and he and my daughter leave me alone until I cool down. I'll usually take a nap or loose myself in a book to de-stress. If it's to bad I take 5mg of Valium, but I don't recommend depending on Valium EVERYTIME you feel angry or depressed. Valium is VERY addictive! Talk to your doctor about appropriate times to take or not to take as needed medication!

Comment below and tell us your most memorable mistakes that have been caused by brain fog.

Love & Spoon dust <3 Missie

Meds, meds and more meds

Well, my daily med count is up to 13. Sometimes I wonder if they're all absolutely necessary, but boy on those bad days I don't know how I would get through the day without them. Ever notice how people look at you or treat you once they realize you take pain meds? The connotation that only drug addicts take narcotic pain meds irritates me, but I don't think it will ever change. I just recently changed a few of mine and added a couple. So, despite knowing that someone will read this or more than one someone most likely, and roll their eyes and think "oh great another pill popper" I am going to share all the medicine I am on.

1) Levothyroxin 200mcg (I had a total thyroidectomy in 2005 so I have to take hormones to replace the hormone the thyroid would produce)
2) Promethazine 25mg I'm always nauseous
3) Meclizine (aka Anti-vert for vertigo)
4) Prednisone (a common Lupie med)
5) Plaquenil (another common Lupie med)
6) Relpax (migraine med)
7) Benadryl twice a day (allergies and hives)
8) Flexeril (muscle relaxer)
9) Tramadol (non-narcotic pain medicine)
10) Norco 10 (aka vicodin for pain)
11) oxycodone 5mg (pain med only for the REALLY bad days)
12) Ativan (to take after a seizure to slow the neurons in my brain and hopefully prevent another seizure)
13) Klonopin (anxiety and sleep aid)

There I said it I'm putting it all out there for the world to see! I'm tired of living in fear of what people will think of me. I have Lupus, Fibromyalgia, Seizure Disorder, Endometriosis, Migraines and acquired hypothyroidism. AND I can't take Motrin or NSAID's because I am allergic to them (hives) and my kidney Dr doesn't want me them, because of my recent kidney issues. So, yes that leaves stronger pain meds. And even if I took Motrin or Aleve, it would do nothing for the deep, severe, daily pain. 

I don't like that I have to take all these meds, I don't even want to take them most days. I sit and stare at them for hours sometimes knowing I have to take them, but just don't want to. How is it fair that I'm barely 30 and have to take so much medication to function. How is it fair that I have to hide it all from most people because they're uneducated and assume I am a druggie because of the type of meds I'm on. This is my life in all it's glory, this is Lupus, this is what invisible illness looks like.
~Sarah

New Rheumatologist

After the big scare with calcification in my kidneys, my nephrologist (kidney specialist) referred me to a Rheumatologist he highly recommended.
I was nervous for this appt as I have never been able to find a good Rheumy.

It made it worse that we had all 3 kids so hubby had to stay in the car with them while I went in by myself, which I hate doing because I always forget stuff. But, this DR was AMAZING he looked at what the nephrologist sent over and then asked me what symptoms I have are. I explained, headaches WORSE than a Migraine, constant nausea and vertigo extreme fatigue, joint pain and swelling, muscle aches and spasms, rashes, sores in my mouth and nose, and seizures.I also have Fibromyalgia and that apparently causes pseudo seizures (fake) SO, he is working on getting me a prior auth through my insurance for a Neurologist at the Hospital he is affiliated with, St Joseph's Hospital and Barrow epilepsy center. SO this hospital has a wing designated for people with neurological issues and seizures. I will be admitted for 5 days and they will watch what type of seizures I have to make sure I'm on the right track with the meds. He also mentioned that a brain biopsy will eventually have to happen. That definitely scared me, but I am putting my trust in the hands of God. I didn't make it this far to give up!

Dr Celeriu (rheumy) upped my plaquenil dose and added 10mg prednisone to take daily. He said if things get much worse at all or the monitoring or brain biopsy of the brain shows something more severe or I just simply don't respond to treatment, the next step would be chemotherapy. This is something we all don't really want unless it is absolutely necessary!

But I have high hopes for this rheumatologist and the neurologist he sends me to.
PCP appt tomorrow, my favorite day of the month when I can get all of my medicine! Fingers Crossed my blood pressure isn't high again!

~~Sarah

Painful Fatigue

Fatigue: Extreme tiredness, typically resulting from mental or physical exertion or illness

I am so fatigued today, painfully fatigued. I look the faces of my sweet angels who just want Mommy to play with them. But, I just can't.It takes every ounce of energy I have just to go to the bathroom. 

My muscles are fatigued as well. I have no strength to lift my arms straight up, or to hold my cell phone, let alone pick one of the kids up.

But, being a Mom, I know I have to suck it up. These kids are depending on me, and it already breaks my heart how my 5 year old handles this all, so brave, calm and understanding. I don't want to miss a moment of my babies growing up, but Lupus has other plans for me! I also hate not going out with friends and family, but I do send my husband and the kids while I stay home. There is usually a lot of talk about that. But, I choose to save my energy for my husband and kids,

I have given up do much to this disease, lost friends and even family members because I'm "different" I know people may not mean to be this way as they just don't understand. Just feels as soon as things for me got more serious and I gave up certain roles, nobody cares anymore. I think that's the one thing I can thank Lupus for, showing me the real side of people. Knowing the people I can trust in an emergency.

Lupus SUCKS it strips us down to almost nothing, it strips relationships from us, it's an invisvble illness so NO ONE believes you're sick. All we have is each other. Jen, Missie, and I are always here to offer support in any way we can. And I'm sure there will be days that we could use the encouragement!

~~Sarah